Additional Learning Resources

“Centering Community Calls for Ethical Research Engagement”

Workshop Series Robbins-Ollivier Award for Excellence in Equity, Tri-Agency

 

Current Case Examples of Ethical Related Issues Happening in Big Data and AI

1. Facebook and Cambridge Analytica Face Mounting Pressure Over Data Scandal
   https://www.theguardian.com/news/2018/mar/18/cambridge-analytica-and-facebook-accused-of-misleading-mps-over-data-breach
   A detailed investigation into how millions of people’s data were harvested without consent and used for targeted political influence, illustrating private data exploitation and the absence of ethical oversight.
   
   
2. The Emerging Problem of "AI Psychosis"
   https://www.psychologytoday.com/us/blog/urban-survival/202507/the-emerging-problem-of-ai-psychosis 
   The article argues that interactions with AI chatbots can unintentionally reinforce and amplify delusional thinking in some users, leading to a concerning pattern dubbed “AI psychosis”. 
   
   
3. Black Dalhousie academics want to create ethical research rules for African Nova Scotian communities https://www.cbc.ca/news/canada/nova-scotia/dalhousie-university-african-nova-scotian-ethical-research-rules-9.7031470
   A group of Black academics at Dalhousie University are developing ethical research guidelines rooted in African Nova Scotian community priorities to ensure research about those communities is conducted in ways that avoid harm and benefit them.

Examples of Indigenous - Led Research Ethics Boards within Canada

1. Métis Nation of Ontario Research Advisory Committee (Ontario) https://www.metisnation.org/  
   Includes protocols for research involving Métis citizens and communities.
   
   
2. Manitoba First Nations Centre for Aboriginal Health Research (Manitoba) 
   https://umanitoba.ca/ongomiizwin/research 
   Community-governed research ethics and data sovereignty support for First Nations.
   
   
3. L’nuey & Mi’kmaq Confederacy of PEI Research Ethics Board (PEI)
   https://lnuey.ca/about-us/
   Independent board that reviews research proposals affecting PEI First Nations, assessing ethical impacts, community safety, and relevance while avoiding redundant or harmful studies. 
   
   
4. Mi’kmaq Ethics Watch (Atlantic Canada)https://mawkim.org/mikmaw-ethics-watch/ 
   A community-based ethics approach guiding research in Mi’kmaq territories.
   
   
5. Native Women’s Association of Canada (Canada)https://nwac.ca/academics-policy/
   Has created a toolkit in 2022  as a comprehensive guide designed to support ethical research that centers Indigenous women, Two‑Spirit, and gender‑diverse peoples.

General Education

1. Digital Geographical Map
   Whose Land Interactive Map - CCWESTT
   https://www.whoseland.ca 
   An interactive map that allows users to identify Indigenous territories, Nations, treaties, and Indigenous-owned businesses across Canada. Supports place-based awareness and helps researchers situate their work within Indigenous lands and governance.
   
   
2. Background Reference Resources
   Indigenous Peoples of the World (by Region and Country)
   https://www.iwgia.org/en/indigenous-peoples.html 
   A global reference list of Indigenous nations and communities organized by region and country, with links to cultural, historical, and political information.
   
   
3. Conducting Research Through an Anti-Racism Lens - University of Minnesota Libraries
   https://libguides.umn.edu/antiracismresearch
   Introduces anti-racist research principles such as positionality, power, and systemic inequities, with guidance for ethical and community-centered research.
   
   
4. Online Glossaries
   Indigenous Terms Glossary: Volume 1
   https://www.ccnsa-nccah.ca/docs/context/IndigenousTermsGlossary-Volume1.pdf
   Defines key terms related to Indigenous Peoples in Canada, including identity, governance, treaties, and historical contexts to support respectful engagement.
   
   
5. Native American Glossary 2026: Key Terms & Concepts Definedhttps://www.nativeamerican.com/native-american-glossary/
   A contemporary glossary explaining commonly used terminology related to Native American culture, governance, and history.

Historical Examples & Early Ethical Breaches

1. Ethics Timeline
   Bioethics Timeline - National Institute of Environmental Health Sciences (NIEHS)https://www.niehs.nih.gov/research/resources/bioethics/timeline
   A chronological overview of major research ethics failures, landmark cases, and policy responses that shaped modern bioethics.

Books

1. The Fire Still Burns: Life in and After Residential School
   https://www.ubcpress.ca/the-fire-still-burns
   First-hand accounts of Indigenous survivors of residential schools, highlighting the long-term impacts of colonial institutions.

2. Historical Aspects of Research Ethics
   https://uq.pressbooks.pub/quality-in-healthcare/chapter/historical-aspects-research-ethics-and-key-ethical-principles/
   Reviews infamous ethical violations (e.g., Nazi experiments, Tuskegee) and how they shaped modern ethical standards.

3. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present
   https://books.google.ca/
   Documents the long history of medical abuse and non-consensual experimentation on Black Americans and its ongoing consequences.

Journal Articles (Open-Access)

1. Fossheim, H. J. (2019). Past responsibility: History and the ethics of research on ethnic groups. Studies in History and Philosophy of Science Part C, 73, 35-43.
   https://doi.org/10.1016/j.shpsc.2018.11.003
   Explores how historical harms create enduring ethical responsibilities for researchers working with racialized communities.
   
   
2. Baptiste, D. L., Caviness‐Ashe, N., Josiah, N., Commodore‐Mensah, Y., Arscott, J., Wilson, P. R., & Starks, S. (2022). Henrietta Lacks and America’s dark history of research involving African Americans. Nursing open, 9(5), 2236.
   https://pmc.ncbi.nlm.nih.gov/articles/PMC9374392/
   This article speaks to an example of harm done in the past to the Black community through Henrietta Lacks story.
   
   
3. Fact Sheet
   Indigenous Experiences with Racism & Its Impacts - NCCIH
   https://www.nccih.ca/docs/determinants/FS-Racism2-Racism-Impacts-EN.pdf
   Explains how structural racism and extractive research practices continue to shape Indigenous health and research relationships.

Development of  Community Research Protocols

Journal Articles (Open-Access)

1. Hayward, A., Sjoblom, E., Sinclair, S., & Cidro, J. (2021). A new era of Indigenous research: Community-based Indigenous research ethics protocols in Canada. Journal of Empirical Research on Human Research Ethics, 16(4), 403–417.
   https://doi.org/10.1177/15562646211023705
   Describes Indigenous-led ethics frameworks grounded in sovereignty, relational accountability, and self-determination.
   
   
2. Demeke, J., Worku , F., Sobers, M., Roche, B., Bailey, P., & McKenzie, K. (2023). City of Toronto Black Community Data Governance Framework. Wellesley Institute.
   https://www.wellesleyinstitute.com/wp-content/uploads/2024/05/City-of-Toronto-Final-BCDG-Framework-Final.pdf
   This framework shows how Black communities can set their own rules for how data about them is collected, used, and shared.

Examples of Community Co-Created Guidelines

1. Smith, L. T., Cram, F., & Ferguson, J. (2010). Te Ara Tika: Guidelines for Māori Research Ethics. University of Otago.
   https://www.otago.ac.nz/__data/assets/pdf_file/0026/318626/te-ara-tika-guidelines-for-maori-research-ethics-613303.pdf
   A community-governed framework for ethical Māori research emphasizing respect, reciprocity, and shared authority.
   
   
2. Jane Finch Community Research Partnership. (2016). Final Report.
   https://static1.squarespace.com/static/5eb97b466d69f33f388d8d15/t/5ed00a7b10c5fb45a534c97c/1590692475824/JFCRP-Final-Report.pdf
   An example of a community-academic co-creation model where residents shaped research priorities, methods, and outcomes.

Specific Exploration to Each of the 6 Key Guidelines Created

1. “Do No Harm” Principle
   National Health and Medical Research Council. (2018, August). Ethical conduct in Aboriginal and Torres Strait Islander research. National Health and Medical Research Council.
   https://www.nhmrc.gov.au/about-us/resources/ethical-conduct-research-aboriginal-and-torres-strait-islander-peoples-and-communities  
   This document exemplifies the “Do No Harm” Principle while working specifically with the Aboriginal and Torres Strait Islander people.
   
   
2. Positionality and Reflexivity of Researcher
   Baily, A. (2025). Embracing temporality: Reflexive insights into positionality and relational dynamics in intercultural research. Research Methods in Applied Linguistics, 4(1), Article 100183.
   https://doi.org/10.1016/j.rmal.2025.100183
   The article speaks to the importance of reflexivity when researchers are examining their positionality in intercultural research.
   
   
3. Community Through Building Trust
   Kerr, S., Sackley, R., Gilroy, J., Parmenter, T., & O’Brien, P. (2024). The Role of Trust, Respect, and Relationships in Maintaining Lived Experience and Indigenous Authority in Co-Designed Research with People Living with Disability. Social Sciences, 13(4), 192.
   https://doi.org/10.3390/socsci13040192
   This document explains the importance of trust, respect and building continuous relationships for mutual benefit between community and researcher through specifics to disabled folks, with emphasis on Indigenous people.
   
   
4. Participation
   Koster, R., Baccar, K., & Lemelin, R. H. (2012). Moving from research ON, to research WITH and FOR Indigenous communities: A critical reflection on community‑based participatory research. The Canadian Geographer/Le géographe canadien, 56(2), 195–210.
   The article explains how participation is active, collaborative, and community‑driven, in speaking specifically to Indigenous communities.
   
5. Sovereignty
   Jull, J., King, A., King, M., Graham, I. D., Morton Ninomiya, M. E., Jacklin, K., Moody-Corbett, P., & Moore, J. E. (2020). A principled approach to research conducted with Inuit, Métis, and First Nations people: Promoting engagement inspired by the CIHR guidelines for health research involving Aboriginal people (2007–2010). International Indigenous Policy Journal, 11(2), 1–30.https://doi.org/10.18584/iipj.2020.11.2.10635
   In this document, the principles give depth and practical ways in which to show sovereignty to the community of interest.
   
   
6. Traditional Community Methods
   Smith, L. T., Cram, F., & Ferguson, J. (2010). Te Ara Tika: Guidelines for Māori Research Ethics. University of Otago.
   https://www.otago.ac.nz/__data/assets/pdf_file/0026/318626/te-ara-tika-guidelines-for-maori-research-ethics-613303.pdf
   A community-governed framework for ethical Māori research using methodology that is aligned with the Māori people. 

AI, Big Data, Data Exploitation and Power

Books

1. Hidden in White Sight: How AI Empowers and Deepens Systemic Racism
   https://www.routledge.com/Hidden-in-White-Sight-How-AI-Empowers-and-Deepens-Systemic-Racism/Lawrence/p/book/9781032437620
   Examines how algorithmic systems reproduce racial hierarchies through biased data and institutional power.
   
   
2. Predatory Data: Eugenics in Big Tech and Our Fight for an Independent Future https://doi.org/10.1525/luminos.215
   Analyzes how contemporary data extraction mirrors eugenic logics and corporate control over human information.
   
   
3. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poorhttps://scholar.google.ca/scholar?q=Automating+Inequality+Eubanks+2018
   Shows how data-driven systems punish poor and racialized communities through surveillance, risk scoring, and automated decision-making.

Case Studies

1. UNESCO: Case Studies on AI and Ethics
   https://www.unesco.org/en/artificial-intelligence/recommendation-ethics/cases 
   A collection of real‑world case studies illustrating ethical challenges and responses in AI development and use, aligned with UNESCO.

Journal Articles/Briefs (Open-Access)

1. Siapera, E. (2022). AI content moderation, racism and (de) coloniality. International journal of bullying prevention, 4(1), 55-65.
   https://link.springer.com/article/10.1007/s42380-021-00105-7
   This article shows how AI content moderation can reinforce racism when racialized people are excluded from decision-making and it highlights ways to center their voices to create fairer, community-focused systems.
   
   
2. Andrus, M., & Villeneuve, S. (2022, June). Demographic-reliant algorithmic fairness: Characterizing the risks of demographic data collection in the pursuit of fairness. In Proceedings of the 2022 ACM Conference on Fairness, Accountability, and Transparency (pp. 1709-1721).
   https://dl.acm.org/doi/abs/10.1145/3531146.3533226
   This paper explains that collecting and using demographic data to make algorithms “fair” can itself create new risks, showing how well‑intended data practices can inadvertently harm the very communities they aim to protect by reinforcing biases and power imbalances.
   
   
3. Rozado, D. (2023). Danger in the machine: the perils of political and demographic biases embedded in AI systems. Manhattan Institute, 14(03), 2023. https://media4.manhattan-institute.org/sites/default/files/the-perils-of-political-and-demographic-biases-embedded-in-ai-systems.pdf
   This document shows how widely used AI systems can treat different groups and viewpoints equally, flagging identical content differently depending on who it targets and revealing how bias in AI can shape perceptions and reinforce power imbalances.